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Monday, June 18, 2012

Sorry I have not written in a while.Emotionally I have not had it in me.Today began another cycle of chemo.It was off to a rough start.Lisa was ready to go this morning and there
were no problems initially.As we neared
the hospital, she asked if she was getting chemo.When I said yes, hysteria kicked in and she
started to cry.As she chucked her baby
at me from the back of the car she said “I don’t want chemo, I just want to go
home.”

Once the car was parked, Lisa
refused to get out.I managed to keep my
cool as my mind raced trying to figure out exactly what is the right protocol
for this.Seriously?Do you just tell your child to get out of the
car and to get treatment that you can’t guarantee is fighting their disease and
could make them feel like hell? Do you scoop them in your arms and run far, far
away from the nightmare.As questions
went thru my head and I tried to sort it out, I just held my breath and
physically dragged Lisa from the car.Sympathetic looks from parents on the elevator had me questioning
whether a chemo kid should be treated any differently from a healthy kid who
has to go for their shots….what exactly are you supposed to do.

As usual, follow your instincts and “doing
what you got to do” was how we got thru the moment.I
chose to forego the lab and went directly to infusion where I let them know
Lisa was having a bad day and would need her blood draw done with them and that
we were way behind schedule.We were in
the waiting room for ½ hour where I cuddled Lisa while she curled up and
refused to make eye contact or conversation with anyone.After about 45 minutes she started relaxing a
bit.At the hour mark, we got into a room
and the situation was explained to her doc and nurse as Lisa crawled under a
blanket and refused to talk to them.We
opted for the slow and easy pace and brought in one of the child life
specialists who was able to engage Lisa in a game on the I-pad.After about ½ of this, Lisa was back to being
herself and allowed her nurse to access her and draw her blood. We then moved
to the playroom where Lisa painted and did crafts and had no issues with taking
her oral chemo or letting her nurse examine her and things went on as “normal”.

It’s heart-wrenching when she has these moments.Today’s episode was even more disturbing to
me because it comes so quickly after an upset Lisa created on the playground a
little over a week ago.Apparently,
during recess, Lisa chose to announce to her little friends that she “was going
to die in 4 weeks”.This was distressing
to all who heard and suddenly Lisa’s teacher was surrounded by a gaggle of
crying girls.They were escorted to the
principal’s office who was able to defuse the situation with the wise words of
“no one knows when they are going to die” and talk of more happy moments and
memories.When we asked Lisa about the
situation, she merely said she thought she was going to die and wanted to go
see Grandpa Mac and Grandma Yesh.Hard
words to hear and even harder to figure out what exactly is going thru her
head.I hope it is merely a 7 year old
trying to make sense of the world and not those of a cancer patient that has some
intuition about their disease or a warrior who is getty weary.

So….lots of emotional upheaval these past few weeks.

On a positive note, a great, big “Job Well Done” to Tom who
graduated from the 8th grade and received two awards at the 8th
grade ceremony.The first award was for Positive Behavior
Support and the other award was for his hard work in Social Studies.This
award saved Tom from missing the8th grade school trip to Washington, DC.Just prior to going to Tom’s award ceremony,
I had drafted an email to his teachers saying that unfortunately due to missing
work (an ongoing problem between Tom and I) he would not be able to go to his 8th
Grade Washington DC trip and they should gift his trip to another student.Neither Tom nor I were happy with the
situation and I kept asking Tom to give me a reason, any reason, that proved he
deserved to go even though he was missing work.An hour later, he had his reason.He was one of the 4 students chosen by all
the teachers from 180 students going Washington, DC to represent Central Middle
School and lay a wreath at the Vietnam Memorial.Way to save yourself …BRAVO!He loved the trip and it was a great
experience for him.Hopefully his close
call at losing the trip will motivate him to turn in his work on time as he
enters the doors of high school in the fall.

Hope everyone is settling into summer.Keep praying and keep living in the moment.

Sunday, June 3, 2012

Lisa started chemo on Wednesday and today is the last treatment for this round. She'll endure another in a few weeks and then an MIBG therapy late July.
Lisa is doing great with her treatments. She either plays with her peeps (nurses and\or Child Life Specialists), takes a nap, or watches a movie during treatment with lasts a few hours. When she gets back home she's running the house like any normal 7 year old.
We're all looking forward to the end of school and spending some time at the cottage. We also have a cruise planned, and the kids have summer camp. We might try to squeeze in a trip down to North Carolina and Michigan Adventure at some point too. As ususal we're trying to make the most of the 80 or so days of summer vacation.

Click links below to:

Hospital Info

O Holy St. Anthony, gentlest of Saints, your love for God and Charity for His creatures made you worthy, when on earth, to possess miraculous powers. Miracles waited on your word, which you were ever ready to speak for those in trouble or anxiety. Encouraged by this thought, I implore of you to obtain for Lisa health, strength and to be cancer free. The answer to my prayer may require a miracle. Even so, you are the saint of Miracles. O gentle and loving St. Anthony, whose heart was ever full of human sympathy, whisper my petition into the ears of the Sweet Infant Jesus, who loved to be folded in your arms, and the gratitude of my heart will ever be yours. ___________________________

St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter, Lisa and ask him to restore our child to health if such be his holy will. This favor, we beg of you through your love for all children and mothers. Amen.___________________________

Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them. Matthew 18:19-20